Tuesday, April 3, 2012

CF Clinic Update

I guess my last CF Clinic was rather uneventful, being that it has taken me almost a month to post about it.  My appointment was March 2.  My PFTs were at baseline, although the F25-75 was back down to 52.1%, down from 89.1%.  This was disappointing.  I thought my new treatments were responsible for raising the F25-75, but now that number is down around to my normal reading.  The doctor is not concerned with this because my FVC is at 115% and my FEV1 at 96.7%.  But I was really hoping to keep the F25-75 higher, just because that number is always so low. 

We discussed albuterol side effects (again).  I bring this issue up at every visit.  I don't like albuterol.  I am very sensitive to it as it makes me jittery.  My doctor and I go around and round on this issue.  She is of the belief that the benefits outweigh the side effects.  I am not so sure.  It is very uncomfortable to have my heart rate increased.  And it really effects my nervousness.  I am already a nervous person, I don't need that compounded by medication.  I asked to switch to Xopenex, which is similar to albuterol, but does not have the same side effects.  The doctor told me there are no studies to support that...but I have used Xopenex and I don't experience the same side effects as I do with albuterol.  I left the appointment without any real course of action and I continue to use albuterol once a day. 

The only other area of significant discussion was about stopping omeprazole.  I had been using omeprazole to control heart burn.  Since I had been doing good, we decided to stop omprazole to see how symptoms would be off of the medication.  So far I have been doing great. 

We also discussed my sinuses, which have been doing exceptionally well.  I have minor flare ups here and there, but I have not had signs of infection since December 2010.  We talked about stopping the use of budesonide in my nasal rinses.  After consulting my ENT, we have decided to stop this medication too. I have not used budesonide for about two weeks now.  Doing good so far, but I am a little nervous about not using any medications in my sinuses.  This is the first time in years that I have not treated my sinuses, so I am hoping it is sustainable.  But at the same time, it is nice taking a break and seeing how I respond.  I do coninute to perform nasal rinses once a day.

After the elimination of budesonide and omperzole, here is my current medication list:

Source CF multi-vitamin
4,000 units of vitamin D
albuterol by nebulizor, once a day
hypertonic saline, once a day
pulmozyme, once a day


  1. Happy to hear about those awesome PFT numbers. Problem with the Xopenex vs. Albuterol debate is there has actually been conflicting results from various studies. And, most studies are very small in number and not widely regarded:

    http://www.medscape.com/viewarticle/719008 and http://www.aafp.org/afp/2008/0501/p1214.html

  2. Hey Colleen! I wander by your blog every now and then. :) I love albuterol personally (couldn't live without it!!!) and can deal with the jitters, but my asthmatic SIL has her heartrate shoot up to 200 if she tries to use it, but she's done great on Xopenex. I respond better to albuterol than Xopenex, personally. ;) I don't see why your doctor would not agree to switch you if it works better for YOU! I hope you're able to get it changed.

    Also, I'm currently putting together a CF Blogroll (http://cfblogroll.blogspot.com)—would you like me to add your blog to the list?